Journey continues

lizzyt · October 20

Hello all. I cant believe it has been 2 years since my first post on this forum. The journey continues. Mom has been in what I feel is a good memory care facility. The staff genuinely appear to truly care about all the residents and do the best they can. Most visits she will talk very little and no context when she does. Just a word or short sentence very quietly and no repeat if I cant hear her. There are things I don't like but have to deal with. I'm glad she is always up when I go there but if I take her some chocolate or snack I feel guilty because the other residents come by looking like they want some or will just try to grab whatever it is. I wouldn't care but I don't know what other people are allowed to eat. The other night there was a new guy there, and he was getting up and down from chairs and walking around the entire time I was there. The problem was he kept sitting on the arms of the chairs and almost falling. I jumped up several times to help him. Its not the staff fault. They cant follow one person around constantly making sure he doesn't fall. Especially when he doesn't stay in the chair for more than a few minutes after he does sit. The dynamic of the place very much depends on what type of residents they have at the moment. And it is always changing some as people come and go for whatever reason.

Unfortunately money is starting to get lower and in the next year or so I will have to move her to a facility that accepts medicaid. Not a move I am looking forward to. None of the ones close by I would consider good. We experienced one already before she got into where she is now. It was awful and I would not go back there. If she is too far away I wont be able to visit as much as I work full time. So lots to consider and really wish I didnt have to deal with any of this . I feel guilty and question myself alot. Even when people say what a great daughter I am it sure doesnt feel that way.

Just venting. Love this forum and reading what everyone else is dealing with and how they cope. It is helpful.

mabelgirl · October 20

my moms ALF has MC and both sides accept Medicaid. It’s an hour from me but is very nice and the staff do a good job. It took some hunting but I’m thankful we found this place. Don’t give up . My mom has a Medicaid waiver for LTC . It does not cover the entire cost so eventually us children will need to pitch in for difference. When folks post about using Medicaid I’m curious if the expectations are for it to be fully covered by Medicaid and if so is there a difference between coverage for full Medicaid (health + LTC )?

ESkayP · October 20

I can see myself in a year, exactly where you are now. My mother has been in MC for a year, and she sometimes seems like she's losing ground before my eyes. Our visits are becoming more repetitive and strained. It's harder for her to communicate with me than it was when she first moved in. In another year, I can see that she may have only a word or two for me. I also understand what you mean about the impact of the residents. There was an angry man at the facility when Mom moved in. I haven't seen him for weeks now, and I wonder if they made him leave. There is also a disagreeable woman who goes into other people's rooms and takes things. The staff has to keep tabs on her at all times. She is short-tempered and tries to escape often. Whenever my mother seems cross, I wonder if she will end up a challenge for the staff. Right now, Mom is still at a level one care. The more levels she needs the higher the monthly rate, of course. I worry about using up her accounts and applying for Medicaid before she actually needs skilled nursing. Where will I take her?

I also feel guilty and question myself. I'm grateful that I get to be there for Mom and experience her love and appreciation, but I also have to witness her slipping away. The truth is I'm terrified of stages 6 and 7. I sometimes hope fate intervenes before that and takes her silently in her sleep. It sounds like a terrible thing to admit, but I honestly don't know if I'm strong enough to face it. This forum of folks who understand the good, the bad, and the ugly of this disease give me courage. I find solace in the fact that I can read a post like yours and feel seen. I'm giving your hand a squeeze.

lizzyt · October 20

There is usually about 17 residents in her memory care facility. Mostly women and sometimes 1 or 2 men. The male residents seem to come and go more quickly than the women for various reasons. There is also a wide range of ages. Right now 2 are my age up to several in there 90s and one or two who are 100! I have gotten to know the staff , residents and even some of the other family members as time goes on.

I also really hope she just goes to sleep some day and doesn't wake. That is how she always said she wanted to go. The only difference being still healthy and independent in her home when it happened. I think that is what we all would like but in reality I don't think many of us get that lucky!

H1235 · October 20

I’m right there with you. AL that accept Medicaid waiver are not nearly as nice. We will need to move mom in about 1 year. Im so consumed with worry and second guessing my decisions. Mom is angry and doesn’t understand why she needs to be there. Her memory is pretty good which adds a whole different ugly twist to things. There is no putting things off til the next day and distractions don’t work. I’m hoping stages 5 and 6 will be easier. Im not holding my breath.

eaglemom · October 20

The journey does continue. It changes, but it continues.

Personally I have no experience with finding Medicaid facilities, but one thing I do know, start early. The other thing I have found to happen several times to others, is that once their parent was in a facility for a certain amount of time (3 yrs.) the facility then accepted Medicaid for that individual. I know that of happening several times. The facilities weren't Medicaid facilities, its all had to do with the amount of time the person had been there. So, as questions. Then ask more questions. And for this I would do it in person, not on the phone or via email.

eagle

lizzyt · October 20

https://alzconnected.org/discussion/comment/226102#Comment_226102

I am sorry that anybody has to go through this process. Sometimes I am thankful that I don't really know what mom thinks about anything as she doesn't talk much and no context to what she does say. If she were able to say take me home I would probably do it. Or feel terrible for not.

psg712 · October 20

It's all so difficult. I had to sign something when my mom went into memory care to acknowledge that if (when) she begins to rely on Medicaid for her stay there, that they may or may not be able to keep her as they have a limited number of "Medicaid beds." I know that this is corporate policy and that the local facility management does all they can to accommodate...but still. Just another stressor.

I too have had the desire that she simply pass in her sleep one day to avoid the further ravages of this disease. I would never do anything actively to hasten her demise but have a very short list of interventions that I (or she, when she was of sound mind) would allow.

Journey continues

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